In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

Tuesday, January 29, 2008

Last week's post on eDocAmerica cites a report by the US Center for Medicine in the Public Interest (CMPI) documenting that searching for medical information on the Internet can cause serious problems. Here's the comment I posted there (edited slightly for this context). Please read it listening for the shift in the wind that's underway with the e-Patient movement I wrote about yesterday.

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Having read most of the e-Patients "manifesto" (white paper) in the past few days, I find the CMPI report rather like a belching volley from a dying breed. (I know they mean well, but they don't yet get it.)

I went through this in the typesetting industry 20 years ago when desktop publishing (DTP) came along. "Horrors, don't let the unwashed own FONTS, for heaven's sake! They'll mix serif and sans in unclean ways!" And so they did. And some still do.

Similarly today, blogs mean a lot of people who can't spell get to publish, or post comments like "u r dum." But with desktop publishing and now blogs, a slew of people have learned how to use fonts (or be publishers) - orders of magnitude more people than all who'd had access to those previously closed technologies.

Of course that analogy's not perfect - nobody gets hurt due to klutzy font use (usually, heh). A better analogy is letting people drive: some people do get hurt by not being driven by a professional. But you ain't gettin' me to buy an armored Hummer and hire a driver every time I want to go to the grocery store.

I need to say here that I completely respect the people who are warning us about garbage Web content. They're right. But there's at least as big a risk from thinking the average physician (even the most conscientious ones) can be on top of all the conditions we show up with. It's especially true given the explosion of new medical information - who could possibly keep up?

While beating a nasty cancer in 2007, I waded through a ton of bad information on the web - and all of it came from respected medical web sites. All of the information I found was out of date; it had all been gathered (and peer reviewed!) before any of today's treatments existed. And when I attended a patient conference that fall, the same obsolete statistics were still being quoted!

The point isn't that "the establishment" is mucked up. A superb part of the establishment (Beth Israel Deaconess in Boston) saved my butt. The point is that there's no substitute for taking responsibility for your own situation. That includes not just learning everything you can get your hands on; it includes taking responsibility for evaluating what you find, learning to sort the garbage from the gold.

And for me the only solution to that is peer review - by *my* peers, the other patients whose butts are on the line, like mine. I joined the ACOR.org listserv for my cancer, lurked for 2-3 days, then asked "Where's the best place for me near Boston?" Within 90 minutes I had three responses, all saying the same thing.

Try asking a medical journal that question when you're in big trouble and need an answer fast. And try figuring out how to tell whether the answer you get is reliable.

Yeah, there's garbage on the Internet. There are also people dying from misinformation due to out-of-date physicians and from overloaded good physicians. (Join one of the ACOR listservs and hear the stories that pop up all the time.) The only viable solution I know is empowerment and teaching each other how to be personally responsible for what we read - and partnering with an excellent physician. It worked for me.

I knew that from personal experience - and then along comes the e-patient manifesto, saying exactly that. Cool.

Please, please, doctors (including CMPI): read the "manifesto," and please understand what it says on page 22: "We modestly suggest that the tentative conclusions below are no more 'anti-doctor' or 'anti-medicine' than the conclusions of Copernicus and Galileo were anti-astronomer."

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What do you think? This is a significant issue. You, or someone you know, will face this issue first-hand, and if you're in my generation it'll most likely happen within 10 years (or already has). What do you think? How will you advise family and friends?

2 comments:

21 years ago, I found a lump on my body that hadn't been there a few weeks earlier. No one told me to look for it; no one thought it was anything to worry about. But I asked to see a urologist anyway. Together we kept track of that lump for a year, until I decided it had changed, and he agreed -- and a few days later I woke up minus a small part of my body, because it was cancer. I had excellent doctors; it was the second time the medical profession has saved my life. But they would not, could not, have done so without my paying attention to my own body, my own health, my own illness. No Internet, then, but the same truths: if you aren't 100% confident that your doctor is a partner, and not a dictator, then you have the wrong doctor. Just like a mechanic, he's a hired expert: the decisions, and the commitment, have to be yours.

We are citizens of the information age and, as British psychologist David Lewis observes, “Knowledge is power, but information is not. It’s like detritus that a gold-panner needs to sift through in order to find the nuggets.”

Sure the Internet is full of detritus as well as gold, but it’s just not that hard to pick the 14-karat sites from the silt and debris. A tougher problem is telling the difference between gold and glittery detritus like pyrite. How do we know what to believe when we read journal articles by medical scientists who are paid by, or have financial interest in, the drug companies who profit from their research? How can we, the public, evaluate the merit of published drug studies when similar studies with less favorable outcomes are not reported?

It’s unlikely though, that the U.S.Center for Medicine in the Public Interest will be helping us identify this fool’s gold any time soon. CMPI is partially funded by pharmaceutical companies. I found that out on the Internet.